Tongue-tied and despairing: Joburg man urgently needs surgical solution

27 March 2017 - 09:22 By KATHARINE CHILD
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Johannesburg resident Warren Bonn will visit a vascular surgeon tomorrow in search of a specialist who is able to remove a rare blood vessel growth from his tongue.

The growth has been in his tongue and neck since 2015.

Bonn has an arteriovenous malformation - a tangle of poorly formed blood vessels - that is extremely rare. It usually affects children and comprises 75% of his tongue, making eating and speaking extremely painful.

Bonn has seen a long list of doctors already. This will be his 72nd in South Africa. They have included general practitioners, radiologists, specialist physicians, vascular surgeons and plastic surgeons, but all have been unable to treat him without removing his tongue.

If the benign tumour grows larger, Bonn will struggle to speak. He has lost 10kg in the past year as he battles to eat.

Some doctors have said they can remove his tumour by removing his tongue and rebuilding a new one, but this will leave him unable to speak clearly.

Bonn e-mailed US universities and had second opinions abroad to try to find a way to remove the tumour and save his tongue.

Dr Alejandro Berenstein at Mount Sinai Hospital in New York responded to Bonn's request for help and said that he could treat him, but it would require six surgeries costing $50,000 (about R621,000) each.

Bonn has turned to crowdfunding and the website - www.youcaring.com - has raised R468,000 so far for his cause.

Discovery Health Medical Scheme has arranged for him to see South Africa's leading vascular surgeon, who specialises in neck and head growths, tomorrow .

Bonn will fly to New York to meet Berenstein on April 4, when he will have a consultation and more scans.

If Berenstein can stop the blood flow, shrinking the painful growth, Bonn will be able to speak and eat comfortably again.

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